Application of Cultural Competence in the Care of

Alzheimer’s Patients

Maria Luisa Faner, MSN, APRN, FNP-C

Objectives

• Demonstrate an awareness of diversity and culture on concepts surrounding the care of Alzheimer’s patients.

• Recognize the importance of cultural diversity in communicating and planning an effective plan of care for Alzheimer’s patients.

• Define expected treatment outcomes in terms of the culture, values, and ethical perspective of the healthcare consumer.

• Adapt cultural awareness and competence in formulating a holistic approach toward the Alzheimer’s patients and their family

What is Alzheimer’s Disease?

• Discovered in 1906 - Alois Alzheimer• Hallmark - beta-amyloid plaques• Neurodegenerative disease - progressive,

irreversible cognitive decline• Mild Alzheimer’s- cortical shrinkage, moderately

enlarged ventricles, shrinking hippocampus• Severe Alzheimer’s- severe cortical shrinkage,

severely enlarged ventricles, severe shrinkage of hippocampus

10 Warning Signs of AD

• 1. Memory Loss• 2. Difficulty performing familiar tasks• 3. Problems with language• 4. Disorientation to time and place• 5. Poor or decreased judgment• 6. Problems with abstract thinking• 7. Misplacing things

10 Warning Signs of AD

• 8. Changes in mood or behavior• 9. Changes in personality• 10.Loss of initiative (Source:Alzheimer’s Association)

Stages of AD

• Early = MCI, sense of smell• Mild =getting lost, financial, repetitive, takes

longer with tasks, poor judgment, personality• Moderate = memory loss, confusion,

decreased ability to recognize, unable to learn new things, tasks with multiple steps, coping, behavioral changes

• Severe = communication difficulties

Progression

• Disease spreads throughout cerebral cortex decline in language, judgment, behavior, bodily functions decline in memory until death

By the numbers

• 5.4 million Americans 2014 • 500,000 added yearly• By 2050- 12.5 billion• Etiology- Genetic, environmental, lifestyle, CV

disease, HTN, High cholesterol, diabetes• Prognosis- death 8-10 years after diagnosis• “Early Stage”, “younger onset”

By the numbers

• Costs for care - $214 billion in 2014*$150 million to Medicare/Medicaid

• Projection - $1.2 trillion by 2050• Cost to families:

2013 - 15.5 million families provide 17.7 billion hours of unpaid care= $220 billion

• 80% care by unpaid caregiver

By the numbers

• 30% of US population= non-Caucasian of various races or ethnic origins

• Largest = Hispanic/Latino and African-Americans

• 2050 = 394 million non-whites• 90% = Asians, African-Americans, Hispanics

Management of AD

• Medications - may help maintain memory/ speaking skills, certain behavioral problems Mild-moderateModerate-severe

• Day-to-day care - ADLs• Social, mental, physical stimulation• Physical activities - continue/modify

Management of AD

• Exercise, nutrition, diet supervision• Managing behavioral symptoms:

sleeplessness, agitation, wandering-Redirection-Engaging methods-Prevent wandering

• Make patient comfortable “care easier”

Management of AD

• Culturally specific interventions- music, food, language

• Reminders -who they are, what they used to do

• Validation Therapy• Listening, responding to questions• Priest/Minister/Lay counselor• Caregiver relief/Community support

Definitions

• Culture - values, beliefs, traits, traditions, and/or language shared by members of a group-A predominant force that shapes behavior, values, institutions-Lenses through which people view the world, how they relate to it

Definitions

• Ethnicity = belonging to or distinctive of a particular racial, national, cultural or language division of mankind

• Cultural awareness = understanding how persons are shaped, issues that influence reactions

• Acculturation = participation in values, language, practices of an ethnic group

Definitions

• Diversity = distinctions such as culture, race, religion, ethnicity, gender, language, any observed differences common to a group of individuals

Definitions

• Cultural competence = understanding, listening, obtaining information, applying information *Whatever it takes to respond effectively/with sensitivity to cultural, racial differences as they impact healthcare delivery, outcomes

*Commitment to provide quality services to all

Difficulties

• Viewing others’ cultures, behaviors through own lens

• Ethnocentricity - superiority of one’s own ethnic group, viewing others’ cultures from own perspective

• Lack of understanding of different political, ideological agendas

• Lack of time

Developing Cross-cultural Mindset

• Be aware of aspects of culture not visible• Pay attention to your thoughts• Maintain cultural humility• Be willing to adjust your behavior• Take time to learn and explain• Arrange for translator if necessary

Diversity

• Non-Hispanic whites/ Europeans• African-Americans • Hispanics• Asians/Pacific Islanders• Middle eastern

Diverse beliefs

• History/Immigration/Language barriers• Difficulty in asking for help• Filial piety, familial hierarchy/obligation• Taboos- illness, death/dying, hospitals,

physical contact, staring, evil spirits, curse, soul loss, food/animal sacrifices

• Sense of time control• Internal cultural support mechanisms

Culturally-based Beliefs

• Personalistic = illness caused by intervention or a supernatural being, deity, dead ancestor

• Naturalistic = health closely tied with natural environment; balance/harmony. *Three approaches: Humoral (hot and cold), Ayurvedic (herbs, minerals), Vitalistic (imbalance in vital energies)

• Biomedicine = body-as-machine metaphor

Testing Methods

• Neuropsychological tests - impairment of performance in memory and 2 other cognitive domains

• MMSE – racial, ethnic, cultural differences• Benton Visual Retention Test• Few cognitive measures validated for use

among ethnic minorities = cognitive impairment

Cognitive Testing Variability

Factors:• Level of acculturation• Years of education, occupation, income• Non-verbal abstraction abilities• Life experiences• Place of birth - border/interior• “Cognitive reserve”, compensation, more efficient use

of brain networks

Non-Hispanic whites/ Europeans

• Polish - stoic, suffer in silence, pain comes from God; communicate condition to family

• German - self-control in response to pain, cause of illness: lack of cleanliness, self-abuse

• Russian – Friday, 13th, stoic, patient care = family responsibility, “intrusion” from HCP

• Italians – Pts. want to know about their health condition, touching is OK

African Americans

• Alzheimer’s Prevalence- 14-100% > than whites

• Risk Factor- CV disease, silent infarcts (decrease in cognitive reserve)

• Fear /mistrust of medical matters• Low participation in research• Religion/Spirituality

Hispanics

• Prevalence of Alzheimer’s - higher • DM (small vessel disease AD pathology)• Number could increase > 6x by 2050 (< 200,000 1.3 million)• Belief in leaving things to God• Traditional family roles/parental hierarchy• Less education, poor assimilation

Asians/Pacific Islanders

• Ethno-cultural groups - Chinese, Japanese, Filipinos, Vietnamese, Cambodians, Koreans, East Asian Indians, Samoans, Hmong, Thai

• Religious beliefs, taboos, traditions• Expected support of elderly family members• Reluctance to seek care• Perception of stigma, shame for condition• Distrust of government

Asian/Pacific Islanders

• Buddhism - health beliefs affected by Taoism• Confucianism - respect for authority, filial

piety, justice, benevolence, fidelity• Ayurveda principles - Hindu philosophy• Chinese traditional concepts of yin and yang• Christianity/Catholicism• Behavior symptoms - natural consequences of

aging, exacerbated by migration, culture shock

Middle Eastern

• Majority - Muslims (7M in America)• Amulets against evil eye, incense, prayers• Emphasis - maintaining good health, diet*• Generally prefer male doctors (except Gyn)• Recovery from illness - seeking Tx, God’s will• Elders have prestigious status, paternalism• Generally look down on mental illness

Communication in AD

• Lengthy explanation -PCP stages of dementia, impending future decisions

• Encouraging questions, dialogues on eventual choices

• Value-oriented discussions - patients, family, surrogate

• Involvement with community groups, support groups

ETHNIC Framework

• E- Explanation• T- Treatment, home remedies• H- Healers, friends• N- Negotiate mutually acceptable treatment

plan• I- Intervention, incorporating alternative

treatments, spirituality, healers• C- Collaboration

Cultural Aspects of Communication

• Speaking too loud• Standing too close• Reluctance to speak/maintain eye contact• No answer to simple question, metaphors• Refusing care• “Non-compliance”, “no show”

Limited English Proficiency

• English is a difficult language!• Keep it simple• Feedback - give/seek• NOT understanding/misunderstanding• Speak slowly/clearly/ NOT loudly• Repeat as necessary• Avoid acronyms/idioms/abbreviations• Write it down/demonstrate/EXPLAIN!

Treatment Outcomes for AD

• Longevity Care - do everything!• Functional Care - do what is required• Palliative Care - “Comfort Care”

Timely End-of-life Talks for AD

• Where to begin? When?• Do I have answers to questions?• Primary care - identify high-risk patients,

communicate prognosis, clarify values, involve surrogate decision-makers

• Estate planning, advance directives, living will, register resuscitation orders

Cultural shift in EOL care

• Burden –partially on medical providers, large burden on culture as a whole

• Shift in attitudes to EOL• Approaching/discussing death more openly• Intervention within cultural centers, churches

AD Caregiver Care

• Day-to-day care-physical, emotional, financial• Changing family roles• Difficulty making decisions- placement• Guilt, blame, regrets

Caregiver Support

Do you regularly...

• 1. Feel like you have to do it all yourself and that you should be doing more ?

• 2. Withdraw from family, friends and activities that you used to enjoy?

• 3. Worry that the person you care for is safe? • 4. Feel anxious about money and healthcare

decisions?

Caregiver Support

• 5. Deny the impact of the disease and its effects on your family?

• 6. Feel grief or sadness that your relationship with the person isn't what it used to be?

• 7. Get frustrated and angry when the person with dementia continually repeats things and doesn't seem to listen?

• 8. Have health problems that are taking a toll on you mentally and physically?

Caregiver Support

• Join a support group• Get strategies to manage stress• Learn new care-giving skills as the disease

progresses• When people offer to help, let them• Know what community resources are available• Respite care

Community Caregiver Support

• Area Agency on Aging- stress management techniques, relaxation, coping strategies

• Alzheimer’s Association- education programs, culturally, linguistically sensitive outreach programs

• National Institute of Aging- innovative programs and initiatives to close racial/ethnic gaps

• http://www.alz.org/care/alzheimers-dementia-support

Alzheimer’s Association of El Paso

• Education Programs: -Conversations about Dementia -Know the 10 signs- early detection -The Basics- memory loss, dementia, AD-Living with Alzheimer’s- People with Alzheimer’s/Younger onset/Caregivers -Legal and Financial Planning -Diversity Outreach Programs

Alzheimer’s Association of El Paso

• 24/7 Helpline: 1-800-272-3900• ALZConnected- online community• Alzheimer’s Navigator• Alzheimer’s Association Trial Match• Community Resource Finder• Care Team Calendar• Approaching Alzheimer’s: First Responder

Training

Alzheimer’s Association of El Paso

• MedicAlert+Alzheimer’s Association Safe Return- 24 hour Nationwide Emergency Response Services Online: medicalert.org/safereturnCall: 1-888-572-8566

• Telephone Caregiver Support Group: Contact Kelli Moorhead 1-800-272-3900

Interdisciplinary Team in AD Care

• Administration, Supervisors• Staff - nurses, PT, OT, Speech Therapist,

recreational, social workers, home care providers, family

• Support staff - dietary, outreach, community resources, daycare

“Grandma doesn’t know me anymore”

References

• Frederick, D., Marinelli, M. (2014). Achieving cultural competency: Adapting to diversity improves patient care. OR Nurse 2014. 28-33.

• Manly, J., Mayeaux, R. (2004). Ethnic Differences in Dementia and Alzheimer’s Disease. NCBI Bookshelf. http://www.ncbi.nlm.nih.gov/books

• McCullough, D (2008). My Mother, Your Mother. Harper Collins, NY,NY

References

• pbs.org/theforgetting• You, J. (2014). Just ask: discussing goals of

care with patients in hospital with serious illness. CMAJ 2014; 186 (6): 425-432.

• www.brightfocus.org/alzheimer’s• www.caregiver.org

Questions?